Looking for opinions

I wrote about this story over at Blogging Baby, and it brought up some really strong responses. What do you think about it?

A couple has three children. One of the children, a girl, has such profound disabilities that she will always have the mental capacity of an infant and she’ll never be able to care for herself in any way. The parents care for her in their home, where she appears to be happy — she vocalizes and smiles when her family interacts with her.

The parents, who are smart and loving and kind and desperately wanting to be able to continue caring for the girl, decided to prematurely arrest her growth so that they’d be able to keep her at home. The treatment included high doses of estrogen and a hysterectomy. She is six years old and isn’t expected to grow much bigger at all.

I understand the motivation, but looking at this case from a clinical standpoint, from the perspective of what precedent it sets, and with the question of this girl’s rights, did the parents do what was best for her?

I’m not sure. I know they didn’t just blindly do this, and I imagine that they may have some regrets over it. It just makes the hair on the back of my neck stand up. I worry about what door is being opened here. We’ve come a long way from the days when mentally ill patients were sterilized and this seems to be moving back to that time. I want to say that since the motivation was good, the action was too, but I don’t know if I can make that leap.

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7 thoughts on “Looking for opinions”

I read this post both here and at BB and I have to say that if this is what these parents need to do to be able to continue to care for their daughter themselves then it is their right. I cannot judge their actions as I do not have an experience even remotely close to what I am sure they go through on a daily basis.

I understand the issue of sterilizing mentally ill patients (as though their illness makes them incapable of parenting a child), however I think that this reaches beyond that.

Aaron pointed out that since she had a hysterectamy and her parents are solely taking care of her, how’s anyone to know if she’s being sexually abused.

To me, it seems a little odd. That’s some real manipulation of medicine and borderlines unethical to me. And, no, I don’t think it was “fully” within the parents rights to do it. She’s not a piece of property.

I can’t even write coherently about this. I already get really distressing though accidental injuries from Leelo during his occasional frenzies (bruises, scratches) and each time my thought is, “Oh fuck, this is only going to get more severe.”

In our case we have the hope that Leelo will become more aware of the consequences of his actions as he matures, but what about parents whose children never have that hope? And who need so much more care than our boy?

Basically I’m not really in a position to comment whether I approve or not. Leelo is not a candidate for this type of intervention. But I can sort of understand why a parent in their position would want to do this.

Having worked with developmentally-disabled adults at the severe-profound level, I can honestly say that the group homes and institutional living situations that many lived in or came from were, even at their best, not good. Most were in insitutionalized care of some kind because their parents had become elderly and were unable to care for them. In other cases, they simply grew too big and too strong and were able to overpower their parents, frequently to pursue a behavior that was dangerous to themselves or someone else.

Perhaps that’s what this child’s parents are hoping to avoid and after seeing the kind of care that is considered acceptable in most group and/or insititutional situations, I totally understand why they believe they are doing the right thing.

Are they violating the child’s rights? Perhaps, but again, in the aforementioned living situations, many rights you and I take for granted are taken from the residents because it is in the best interest of their healthy, safety and general welfare.

I’m not so sure anyone can judge if the parents made the right decision, at least not yet. They’re thinking that this will ensure that they can take care of their girl for the next twenty or thirty years and then the duty will fall to one of her siblings, and be a little easier on them too because of this treatment.

Still it seems drastic and ridiculous when really what’s needed is adequate state provided care. Why is it easier to chemically manage a situation like this than it is for the government to invest in long term and appropriate health care? I know the parents have no control over that and I’m not getting at them but honestly doesn’t it seem that to make a this decision they must’ve felt abandoned and facing a bleak enough future for their daughter regarding her quality of life & care?

The only thing that makes the hairs on the back of my neck stand up is that people think they have a right to judge this family for loving their child and making their decisions to care for this child. Out of fear – fear of the rest of the world never caring a shit for their child for being ‘different’.
None of us has a right to judge their choices.
And Aaron has some deeper suspicions/issues.